Melissa Anne Cohen

Look, there are going to be good days and bad days.  I know that.

Today is a bad day.

I fought with Sam for more than an hour about taking his medication.  I threw a phone and a doll carriage, he swore, I swore back at him.  He cried, I cried.   We were both furious and desperate and sad and scared.  He’s still sick to his stomach, still can’t stand for any length of time, and swallowing the pills hurts his stomach.  But if he doesn’t take them, then the pressure might elevate back up and we’re right back where we started.

In the end, he took them.

I’m shaky and cried out.  He’s exhausted and depressed.

All I could think was that I was going to have to bring him back into the ER.  And they’d probably end up taking him and putting him into the mental health ward, because he’s so depressed.  Which would mean that they’d take him away from me.  Or alternately, I’d be trapped in the hospital, the place where he’s most miserable and unhappy, because only there can I make sure that he’s getting the medication he needs to get better, all the while having him sink lower and lower into depression – and the entire time I’m there, I’d be missing my girls and my husband and my dog – and the whole family would be lost in this endless loop of misery and sadness.

It doesn’t feel like this is getting any better.

I know it is.  I mean, he’s drinking ginger ale, so right off the bat, that’s more than just water.  And he did, in the end, take the meds.   He’s resting sort of comfortably, and he’s not complaining of a headache.  He hasn’t vomited since yesterday morning.

I read somewhere (probably when I was seriously sleep deprived, so it may not be entirely accurate) that the human body could go without sleep for one night and it doesn’t make much of a difference.  I find enormous comfort in that.  And because I’m a huge believer in the placebo effect – in that, if I believe it to be true, I’ll make it so – it works for me.  Every now and again, circumstances will be such that I just won’t sleep that night.  It’s really entirely kid directed – I never randomly decide to not sleep unless there’s a child demanding that I be awake.

But it is nice to know, and it was nice to remind myself last night when I couldn’t sleep, that I could still survive today.

If I don’t find coffee, though, all of this may be moot.  Lack of caffeine might kill me.

We did okay last night.  He was so much better than I had anticipated – he was calm, conversational.  Kicked my butt at chess.  His vision is maybe a little bit better – but it’s hard to know what he can see.  He’d swear that he sees FINE, and thinks that it’s maybe a little bit less blurry.  He was in no pain, which is the main thing.  A little headache, which is to be expected after a spinal tap.

His main problem now, other than the fact that we’re here, and his dog, sisters and dad are in Worcester, is that he’s got a catheter in his hand.  He hates it, and flat out refuses to get the IV attached.  So far, they’ve been wonderful here with him.  His nurse tried to hook the IV up to it last night while he was sleeping, and he woke up and was upset.  She removed it right away.  Unfortunately, he was up for two hours or so after that… but God bless wifi and netflix, because he just watched cartoons quietly until he fell back asleep two hours later.

I couldn’t sleep.  I dozed.  Off and on, and finally gave up.  Watched more netflix, read for a while.

We found out last night that Sam needs surgery.  Actually, we found out two days ago, but it was supposed to be done sometime next week.

Last night, we found out it was today.

It’s just Sam and I at the hospital.  Marc needs to be home, he needs to work, and we both agree that the girls need a parent at home.  So I’m here alone, and for the most part, it’s fine.  It was a little touch and go earlier – when he was freaking out and someone had to talk to the doctor.  He was terrified and wouldn’t let me leave the room, so he talked to the doctor too.

It’s not the average nine year old who could hear the surgeon casually talking about slicing a little hole in his eye and be able to handle it.

But he did.

He’s terrified.  But he’s managing.  I’m so, so proud of him – because he’s so brave.  I’ve thought, so many times over the past couple of months, that Sam is a horrible patient.   Because he is.  But I’m realizing today that it’s less about Sam being a horrible patient and Sam being in a horrible situation.  He’s just a little boy – and he’s had to deal with so many things, so many awful, terrifying things happening to him and he’s got no say at all.

He’s in the MRI now, and they’re doing another spinal tap afterwards.  It’s going to take another half hour or so, and then recovery.  Surgery tomorrow, and then maybe, we’ll go home tomorrow night.  More than likely, it’ll be on Friday.

We have options.  None of them are good.

We had the doctor’s appointment today.  Five hours worth of doctor’s appointment, adding in commuting time back and forth to Boston.

It might just be that his vision is permanently gone in his right eye.  His left eye is basically 20/30 with incredible nearsightedness.  He can see pretty well, it up has to be really, really close.  His right eye is 20/200.  It’s possible, probable, that the damage to the optic nerve was just too great, and isn’t going to improve.

It’s possible that there is a clot, or a problem with the veins.  Something that’s just not allowing the cerebral-spinal fluid to drain.  Maybe we need to do another MRI and spinal tap.  That could probably be done on an outpatient basis.

It’s possible that what he really needs in a stint or a shunt.  Not sure why he’d need one versus the other, because my mind was screaming “BRAIN SURGERY” over and over again at this point in the conversation.

And what’s makes it worse is that even if we decide to it all, the MRI, the spinal tap, the surgery – there’s a good chance that all we’d get is minimal improvement.  That he’s never going to regain full sight in that eye.

We’re home tonight, and waiting for a call from the neurosurgeon.  They’re consulting tonight.

I have no words.

I don’t know what to hope for – another round of testing, which is torture and trauma for my little boy.  And no guarantees that it’ll help.  Or acceptance that it’s not going to get any better – that my little boy is going to partially blind, and will have to live his life with only one good eye (and even that eye is crappy by any reasonable standard).

This is where we are.

But we’re home, and I’m grateful for that.  I’m grateful that he took his meds tonight without a battle.  We learned that the metallic taste in his mouth is because of the diamox.  Which is good news, because I thought it was because of the concussion, and might or might not come back.  But it’s actually a common side effect of the medication, and will go away once he’s able to stop taking it.

My girls are okay – they spent the day with their grandmother (did I mention that Julianna had head lice?  I found it last night, and kept her home today to make sure that the shampoo/removal worked).

I’m numb.

There are a lot of up and downs these days.

One of the bigger challenges has been Sam’s sense of taste.  Sam was an eater – he was a kid who LOVED to eat.  Loved it.  He had a huge appetite, and it was an incredible source of pleasure for him.  Not just pleasure – comfort.  He was a huge comfort eater – it soothed him, it stopped the gastrointestinal pain.  He just straight up loved eating.

Now he doesn’t.  His sense of taste is all out of whack.  He doesn’t like anything anymore.  He can’t eat meat, condiments, can’t find a fruit or veggie that he’ll try.  He drinks water.  All the time.  He’ll eat cinnamon buns, peanut butter, and chocolate rice crispies.  That’s it.

It’s incredibly frustrating, not just for him, but for me too.  Because every meal means tears and sadness and anger.  There’s nothing I can offer that he likes, only those three things that he’ll tolerate.  Forget healthy – I’m just shooting for food in his belly.

Last night, I was making beans and hot dogs.  Sam used to love that.  He loved hot dogs cut up in beans, hot dogs sliced with ketchup, hot dogs in a bun.  But now… he can’t eat that any more.  He was so sad, and so hopeless, and then so angry – and there was nothing I could do to make it better.  I just have to sympathize, and encourage him to problem-solve, to want to accept solutions instead of shooting them down, and to know that it’ll get better.  He was mad, and yelling at me.   I know it’s normal, I know he’s got to put the anger somewhere, and I’d rather it be me than himself.

Eventually, he calmed down, asked for cereal and ate two bowls.  Given that it was all he ate yesterday, at least it’s fortified, right?  Go me.  The night moved on, and I was busy bathing Julie, putting her to bed.  Marc came home just as she was going down, and I let her get up and go play with Daddy for a while, while I vegged out with netflix waiting for her.  When Marc finally sent her back into her bedroom, I heard Sam ask him to run a bath for him.

I have to explain that Sam wasn’t a fan of bathing before the accident – he was the grubbiest toddler I’ve ever known.  He hated baths so much that on at least one occasion, he cried until he vomited in the tub.  Sam never, never, never asks to get clean.  He bathed, but it was always me suggesting, pushing and then insisting.  After the accident, it got significantly harder.   Getting in and out of the tub is hard.   It hurts.

His hair is a disaster.  I like it shorter.  Not super short, but shorter.  I wanted to get it cut before the accident in early March.  I’ve been teasing him about his hair, talking about getting it cut off and on, and he’s always insisted that he’ll do it later, once he’s not broken, once he’s all the way healed.   Given that there’s so very little in his world right now that he can control, I didn’t push.

Last night, he asked his dad to fill up the tub, and to cut his hair.

It was the sweetest apology I’ve ever gotten.

I’m a homeschooler.  So to speak.  I’m homeschooling in theory – in reality, I’m reading Harry Potter and the Prisoner of Azkaban out loud and strongly suggesting that he watch documentaries.

We’re in a weird place right now.  Not just with his physical and emotional recovery, but also with his academic recovery.

He’s physically recovering, a little bit, slowly, slowly.  There is progress, but he’s still seriously compromised in a lot of ways.  Physical activity is non-existent, his appetite is totally shot, he still gets headaches and can’t see at all in the dark.  His eyes are tracking better, I don’t think he’s technically legally blind any more.  But I don’t think he can see well enough to read anything serious, and he gets pretty intense headaches when he concentrates for a long time.

Emotionally, he’s hanging in.  The anxiety isn’t overwhelming, but it’s only because we don’t do anything.  He can’t do anything, so it’s not like I’m asking him to go anywhere or do anything that would incite the anxiety.  Unless it’s going to the doctor’s – in which case the anxiety goes thru the damn roof.   His whole idea of safety is wrapped up in me – he gets really tense when I’m not home.   The few times I’ve left the house (other than to run and do pick up and drop off for the girls), he calls me, crying and begging me to come home.  The idea of getting a sitter to stay with him other than one of his sisters freaks him out altogether.

And academically – I’ve got nothing.  He can’t physically do anything and has absolutely no desire to do anything academic.  Watching “educational” videos cause meltdowns (God help Julianna who LOVES the schoolhouse rock DVDs I got for him).  I read out loud to him.  From a book he’s read before (Marc read it to him years ago).  He’ll watch news with him, documentaries and science shows.

So I’m researching – there’s little I like more than a little research.  Stealth schooling is my new favorite term – I trick him into learning.  A little bit.   I hope that we’re making the right decisions with him, I pray that by decreasing the pressure, by stepping back, by giving him space to heal, space to thrive, he’ll come into it on his own.  I deflect the questions, I smile sadly when people tell me that he’s falling so far behind.  I know he is – I’m just hoping that we can stop looking at it as he’s falling behind, and more like he’s just where he is, and go from there.  If I’m homeschooling, maybe I don’t need to worry about grade level.  He’s learning, he’s just not learning in a traditional manner right now.

My hope, please God, my hope is that he’ll continue to heal physically so that we can work on everything else.  We can work on the anxiety – maybe the anxiety won’t be anywhere near as intense if we aren’t doing public school.  I wouldn’t have described him as an anxious kid prior to sending him to school.  Maybe pulling him out of school will be the best thing we’ve ever done for him.  Maybe this is will give him the opportunity to thrive, to grow and learn and be exactly who he wants to be.

The improvements are there – they are.  Given where we were a month ago, he’s measurably better.  But day to day, it’s a lot tougher to track.

His eyes are tracking substantially better.  I’m staring closely at him all the time, and I think those are all the way better.  His vision is improving, slowly, slowly, but I think it’s improving.  He seems to be moving easier, sometimes at least.

He’s still in a lot of pain, he’s still got a lot of headaches and arm pain, and his vision is still nowhere near where it was.   A problem that’s recently cropped up is that his sense of taste is all over the place.  Things he used to like suddenly taste terrible, and he’s not willing to try new things to replace them.  I don’t know if its that the sense of taste has changed or just disappeared.  According to my good friends at google, this happens in 25-30% of concussion patients, and sometimes it comes back and sometimes it doesn’t.

He’s still got all the anxiety issues from before, probably worse.  The problem is that now I don’t know how much of it is anxiety and how much of it is an actually physical problem.  Does he not want to go to a party because his head hurts when he moves too fast, and his vision is so compromised?  Do I push him to do it anyway?  If it was just anxiety, I would push.  Even if it was just physical, I think I’d push a little – but the combination of the two, the anxiety and physical ailments (all of which are invisible – it’s not like I can stick his little head into an xray and see if the break has healed the way I could if he broke his ankle) – it makes me really hesitant.  I force doctor’s appointments, I force play dates here at the house – but going to the bar mitzvah next week for a friend’s daughter?  I’ll let him skip that.

In other news – this morning went substantially better than yesterday.  Okay, it did start at 3:00 am, when Julie climbed into our bed, and Sam started calling us from the living room (he fell asleep on the couch).  His head hurt and he couldn’t get up on his own.  I took Julie, Marc got up and get medicine for the Boy and got him into our bed.  Sam was totally up for the day, and so, unfortunately, was I.  But once the girls got up, they were pleasant and sweet, and the morning went along easily enough.

So we’re making progress, and the bonus to me working from home for only a few hours a day is that the mid-morning nap won’t be a problem.

My name is Melissa, and I’m addicted to coffee.

I’ve come to grips with it, and am no longer ashamed.  I don’t smoke, have never tried drugs, drink so rarely that it’s more accurate to say that I don’t drink.  But I have a raging coffee addiction and I’m proud.  I’m even perpetuating it into the next generation, as Jessica has started getting herself a cup every morning as well.  I’ve been able to limit it to just mornings with her – even I have my limits.

Ever since Sam got sick, I’ve started with the mid-afternoon cup of coffee.  Sometimes two.  The morning coffee – that’s a given.  I have two cups before I head out the door to drop off the girls, and then I’m good.  But then Sam got sick, and I wasn’t sleeping at night, the mid-afternoon coffee became essential.  It didn’t take long before the occasional cup of coffee because a daily thing, and then an oh-my-God-if-I-don’t-have-that-coffee-I’m-going-to-kill-one-of-my-kids.

Now my day revolves around the coffee.  I start my day with it, and I have a couple of cups every afternoon to keep me going.  I usually hold off until after the girls get out of school, but then, oh, please, yes, the glory of a hot cup of coffee with the perfect ratio of sugar:cream:coffee.  And then suddenly, the rest of the afternoon seems more… manageable.  I can handle the homework battles, the dinner dilemma, the bathing/teeth brushing/please-God-won’t-you-just-fall-asleep-already brawl that Julianna insists on every night.

Having a 13 year old is no joke.  Having any kid of any age isn’t easy, but there’s a special little challenge that goes along with having a 13 year old daughter.  She’s brave and brilliant, gorgeous and funny and lovely.  Also bitingly sarcastic, moody as hell, and not at all shy about expressing it.  Jessie is all about doing it 110% – whether it’s good or bad, she throws her whole self into whatever she’s feeling and it spills out all over everyone.

Mornings are hard.  They just are.  Some mornings are better than others, most mornings are better than others.  I love good mornings.  I genuinely love driving my girls to school, talking about what we’re doing after school, debating different dinner options, and kissing them goodbye before they bop out the door.

Today was not a morning I’d like to repeat.  Similar to last Thursday, it was a morning when we just battled the entire drive.  I’ve adopted a new technique, I just pull over and refuse to drive until she can speak to me kindly.  Depending on how furious I am, I’ll pull over gently or I’ll slam on the brakes.  This morning, I slammed on the brakes.  Given that part of what she was furious about was that she wasn’t able to buckle herself in easily (mainly because she had chosen to get into the car with her backpack on, her books and glasses and flutes and binders on her lap), she went flying forward and slammed her flute into her chest.

Not a good morning.

She was okay – furious all over again, and sore because her ribs hurt.  Upset about her life, because it’s hard right now.  But life is always going to be a little hard sometimes, and super hard sometimes too.  You have to learn to control your emotions, and not take it out on others, especially your mother.

We made up by the time we got to the bus stop, she kissed me good bye and told me she loved me.  But now I’ll spend all day worrying about her, and thinking about her poor little ribs with the flute jammed into it.

Hopefully tomorrow will be better.

I’m angry.  I’m just so… mad.  It’s getting a little better, I guess, but I’ve spent most of the past week absolutely furious.

I keep telling myself that it’s normal, it’s only to be expected.  Anger is okay – it’s just an emotion I have to wait out.  The past two months have been hellish, and while things are so much better, they are a long, long way from the way they were.

Sam’s legally blind in one eye, and the other eye is only 20/60.  He’s got soft tissue damage on one side, his shoulder is so tight and knotted.  He’s nine, and not the most enthusiastic of patients on a good day, which means that putting any sort of ointment or cream on his shoulder and arm is a battle royale.  Taking him into the doctor – it’s a fight, a brawl that involves me forcing him to get dressed, dragging him out of the car, and shoving him in, while he’s begging and pleading with me to please, please just let him stay home.  And even when I get him into the doctor’s office (a two hour trip, one way, involving a wheel chair and bribery the whole way),  he’s uncooperative and terrified the whole time.

We’re financially struggling in ways that I thought we had moved beyond, because when all of this happened, I had to drop my hours down to only 10 hours a week.  Marc is working a zillion hours a week, and I’m frustrated and so, so mad.  Just all the time.  I’m furious at what my life is like, I’m furious at what my son is going through, every day.  I miss my old life, with three healthy kids, with a schedule that made sense.  I miss my son going to school, laughing with his friends and learning.  Now he’s sitting at home, playing minecraft to distract him from the pain, and wondering what happened to his life.

He is getting better.  He is.  If I look at it from week to week, instead of from day to day, it’s easier.  He went out to dinner last night with us.  He had Harrison over for a playdate.  Three weeks ago, that was impossible.  Two weeks ago, one of those events would have worn him out to the extent that the next day would be spent in bed.  He is getting better.  He just is.  But it’s still so damn hard.  I don’t know how  long any of it will last, what will full recovery look like?  When will this be over?  Can he go to school in September?  Can he go next September?   Should he go?  Because even if I get past all the physical issues, there were still huge and debilitating emotional problems with school.

If it was just one thing, just the anxiety, I could do it.  If it was just the physical concerns, I could do it.  The combination of the two, the anxiety combined with the vision and the pain – knowing where to draw that line – when to force him to do stuff, when to make allowances, when to give him a pass – I never know.  I try and balance it – I try to guess, to walk the line between forcing him to do things he doesn’t want to do, and understanding when he’s just been forced too far and needs a break.   I never know, not for sure – am I forcing him too much?  Am I letting him get away with more than he should?  Are my expectations too high, not high enough?  What is he capable of, what should I let go?

And if I don’t know the answers – how much am I letting him down?  The stakes are so high – this is his life, and I don’t know what’s right and what’s wrong.  Am I listening to the right doctors?  Should I have believed the one who thought we should admit him and do another invasive round of testing, that there’s a small window of time to reverse this damage – or was it right to listen to her supervisor who thinks that we just need to stay the course, and wait it out.    Did I listen to the doctor who said what I wanted to hear, or did I listen to the doctor who was right?  And if I’m wrong – did I just consign my son to a lifetime of vision problems?  Nobody knows for sure about any of this – does he have a concussion, is letting him watch a kindle or play minecraft doing more damage?  Or is it a viable pain management technique?

He was just riding his bike.

He is getting better.  He is.  He’s sleeping fine, and waking up on his own.  He’s down to a few doses of motrin a day, and we’re working on getting the stomach pain under control.  He went to Target with me on Thursday, and that was huge.  He had people over all day yesterday, and soldiered through the whole day.  He played with his friend, and was able to go out to dinner with his family last night.  He even slept alone last night, which is a major accomplishment.

He is getting better, and I need to stop being so mad.  We’re getting through this.  It’s hard, but it’s not impossible.  He’s going to live – and there are a lot of doctors who think he’s going to make a full recovery.  We just have to stay the course (as long as that doctor was the one that was right…).  We just have to keep going, keep pushing, keep praying, keep hoping that he continues to improve.